My name is Richard McBride and I have ALS. I was diagnosed in November 2012 at 57 years of age. This blog will cover my journey. Just remember, I am living with ALS, not dying from it.

Thursday, 22 May 2014

Halfway

About 15 years ago a friend of mine asked me "Do you think we are past halfway?" I asked him what he meant and he went on to say that, at our age, at that time our early forties, statistically speaking we were halfway through our lives. I commented back that, given modern medicine and health care, there was no reason we would not live into our mid-80's, so yes, we were at about halfway.

On November 22, 2012 I sat in a hospital room while a very well educated neurologist told me that I had ALS with a life expectancy of about 36 months. Suddenly my "halfway" was about age 30; there was a fair bit of reasonable doubt that I would make it to 60. He asked me if there was anything special I wanted to do in my life. Given the kind of life I have lived and the opportunities I have had, I said "not really". His answer was "Well, if there is anything, do it sooner rather than later."

Today is a new kind of "halfway". Today is exactly 18 months to the day, and nearly to the minute, from getting that fateful diagnosis, that harsh estimate of 36 months. Since that day I have lost my ability to walk, my ability to stand, my ability to spend summers on my boat and fall traipsing in the bush. I have lost my job and have had to commit most of my remaining capital to creating a living space where I could still function.

It seems appropriate that today should be that halfway day, filled as my day is with visits from occupational therapists, sizings for new slings and lifts to help my failing arm, having my wheelchair serviced and getting a "free wheel" attachment to make my trip to Europe easier. I am not declining as quickly as expected. I seem to have plateaued for many months, with only small changes in my arm strength. I can still drive; I can still travel; I can still cook and entertain. There are changes, continuing changes, in my arms but they are so small as to seem immeasurable. I can see them; others probably cannot.

So am I really halfway? I think my prognosis may be somewhat longer than the next 18 months. I am hoping for an additional year. I am hoping to be one of those PALS, the 20% who get past that five year wall. My first symptoms were in the spring of 2011, three years ago. I have already beaten the 50/50 odds on three year survival. With any luck, I will see 60 yet.

The reality, of course, is that none of us knows the number of our days. All I know for sure is that my halfway was somewhere around age 30. Where I am now is a different kind of halfway, a halfway into the unknown. Instead of looking at that halfway, I am focused on today. Each day is a gift from here on out, as is has been up to now. In my case, halfway may be the whole way. I'm okay with that. Half-way is better than no way.

2 comments:

Richard..I've been reading your blog from time to time. Glad to hear you feel strong at this point. I'm sure attitude has something to do with every disease state out there. Try and stay focused, as you have been. You are a courageous human being.

My prayer for you, today Richard, is that you will live until Charlotte and Rose will remember you.If their mothers work to keep your memory alive after you are gone,they will remember pool and play times with papa. Im glad you are doing so well , and you should be OK on Air Canada as long as you are not a cat